Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I think the hardest part of grief for me has been the realisation that I’m still disabled throughout it. I hate to make this all about me, in fact I try to make it not about me whenever possible. But I find myself spending a lot of time hurting over the fact that I can’t mourn those I love in the way that I want to.
I’m sorry.
I know I’ve written about control before, but a lot of my life feels out of control right now, and the little things are really throwing me.
I just really want to be able to make my own decisions in my life but that’s not something you’re able to do when you’re disabled.
All I really want is not to have strangers in my house, and yet they are, whether I like it or not. I don’t have control of what happens in my own home or life. It’s getting harder and I’m trying to be big about it, because it’s Christmas and in all honesty I have to be the bigger person here. But it’s so hard.
I just want my space. I just want control. I just want not to be disabled in my own space.
Please just ask me. That’s all I’m asking.
Describe a man who has positively impacted your life.
Someone told me once, that I can answer the prompts anyway I want so I’m going to.
The first that comes to mind when answering this question is The Doctor from Doctor Who. Now I’m aware this isn’t technically a man or a human and even more technically is a TV character. But they were the first I thought of, and they have definitely had a positive impact on my life.
Doctor who was my first experience of something that acted as a level playing field for me. It didn’t matter I was disabled, all that mattered is I was a fan of Doctor Who. The lessons that the doctor taught really spoke to me, and I will forever be grateful for them.
Even more so I will always be grateful for the friends that The Doctor gave me. This is the only Doctor I can honestly say I would trust with my life. And I honestly can’t wait for the special at Christmas.
I’m sorry for not writing more, I want to write more but I’m in one of those places where I want to write until I starting writing. But I’m trying.
What skills or lessons have you learned recently?
Today I did a lot of little things, they were all new, and I’m quite proud of myself for doing them. But I don’t think most people would even call them skills, and that’s just sad to me.
I realised today that if something feels important to you, it is allowed to be important. It doesn’t matter if other people would find it important, you do and that’s all that matters. You should celebrate your wins no matter how others may view them, and that is what I did today.
I’m going to list the wins I made today:
These might seem unimportant but I honestly felt good that I managed to do all of this.
Be proud of yourself for what you have achieved.
So first I want to apologies for my absence. It feels weird to continue life after losing someone close but life continues to go on whether you like it or not, so I’m trying to get back into this.
So the person who I live with is pregnant, and they are looking at moving out. So that leaves me at least eventually when they can find somewhere to live, living alone. And while there is no time scale on when this will happen, I’m still trying to plan for when it will happen. For whatever living independently is going to look like for me.
But living independently for me also means living with a dog, I can’t imagine my life without my babies. But one of my carers is very concerned about my ability to manage and in all honesty it’s getting on my nerves now. I’ve not even started trying and she’s already expecting me to fail because I’m disabled, I just don’t think that’s fair.
Sure it’ll take some working out, but I can do this. And I’ve got time to work it out. The only problem I can see is that she sometimes goes to the bathroom in the kitchen in the night. This is something I can clean up once I’m up, but obviously I won’t be up until the first time the cares have been in the morning. And if it really bothers them they can get stuff ready including water the night before, the bathroom is through the kitchen, so they won’t have to go through the kitchen until I’ve had the chance to clean everything.
I literally cannot think of another issue with having her that I can’t solve.
Any anything that might be a little more difficult is just worth it to have her, to live with her, to have my baby.
I deserve comfort and love. And a chance to live my own version of independence and for me that includes living with a dog. I don’t think that’s unfair, even if she sometimes goes in the house. It’s not like I have no way of cleaning it at all or I’m asking them to do it.
Anyway I have time to sort this. I just wish people would leave me to my business, and at least let me try before they’ve decided I’ve failed.
There’s a lot of change in my life lately, none of which I have been able to have a say in. And it’s very annoying to have people judge how I’m dealing with it all, when I’m just trying to do my best.
Early this evening I was too tired to eat so I fell asleep. Now I’ve woken up, and I’m hungry. But I don’t want to wake someone up for help.
I know I could but it feels mean. I find myself sat here waiting to catch them when they wake up for food.
It’s silly really.
I should have eaten earlier.
I’m actually sat here writing this post to avoid replying to the email just that little bit more. That’s how much I really don’t want to do it.
It’s a response to a previous email about something called Disability Related Expenses, which is essentially extra payments I have to make because of my disability. It’s part of what I and other disabled people have referred to as the disability tax, but it’s a lot more official. And I really have to prove everything I say, in order to get my payments towards my care lowered.
While I abstractly understand why I have to prove these costs, because I simply can’t just claim I pay for something that I don’t. In practice it’s something I hate doing.
Proving my disability just makes me feel very disabled. It makes me feel judged. Like they think I’m lying in some way that I know I’m absolutely not lying. Like they’re waiting for who I am to trip me up. To judge whether I’m disabled enough to not have to pay for care that I obviously need.
And really that’s the hard part, the fact this is all about a payment for something I need but don’t want. And as someone who doesn’t earn, it’s not something I think I should have to pay for in any way. But yet I do.
I need to write this email. I need to get it done. I just really really do not want to.
Society really is the worst part about me being disabled.
I wouldn’t say I wish chronic illness or disability on anyone, but as I age and everyone I know slowly joins the disability club, it’s an interesting experience.
Watching their entire life change as they learn to cope with things I’ve been coping with my whole life. Watching others care because it’s new to them, and knowing it won’t last when they loose interest.
I don’t mean to judge anyone with this post, it’s just what I’m observing. It’s like everyone around me is starting to join the club, just like I told them they would. And sometimes I just want to go “ha I told you so”.
If you’re reading this and you’re not disabled just reminder that Disability is a matter of when not if, one day it will be you.
So I’ve been trying to get on to a transport service in my local area, specifically aimed at those who would struggle to use public transport or drive for whatever reason. While they are technically accessible if you use a wheelchair, like most of the things in society, they are still extra complicated for wheelchair users.
I expect things to be more complicated when I try to access them as a wheelchair user, but there’s something that little bit more annoying when trying to access a service specifically aimed at people like me. You would just think they’d be more prepared, that they would know what they were doing. That there would be less steps, if anything,,but definitely not me.
I know I’ll get through all the extra nonsense yet again and be able to use the service. But there’s just so much of it, and it keeps happening. It really feels like society is punishing me sometimes for being disabled.
For reasons that I hope are clear if you’ve been following me for a while now, I’m a member of many different disability and chronic illnesses groups on social media. A common topic in both is chronic pain, but something I don’t see discussed is chronic discomfort.
In my experience this goes alongside chronic pain but is something that is distinctly different at least in my experience. But no one seems to talk about the difference, so it has me wondering if I’m making it up or just not phrasing it right?
It’s like sitting in my body doesn’t quite feel right. Like I always need to be moved a little bit, and I can never find that one spot I’m looking for. In itself that’s doesn’t hurt, I mean it does hurt, I do hurt but that feeling is different to me.
I don’t know maybe I’m talking rubbish. Maybe it’s the same thing. Maybe it’s because I’ve spent so much time in my chair recently. Who knows? Not me.
My Inaccessible Life 